Has anyone experienced this? My father recently started seroquel, prescribed for his delusions. I think he is more confused and agitated for 3-4 hours after taking it. I am going to call his doctor tomorrow and ask, but I wanted to check in here first.

Emanuel,Yes, this can happen with Seroquel. A handful of people have reported problems with Seroquel in the past on the Forum. One person even developed NMS from one dose of Seroquel.Robin

Tue Oct 18, 2011 8:46 pm

AnnieN

Joined: Sun Oct 04, 2009 10:18 amPosts: 276Location: Washington State

Re: Seroquel increasing confusion and agitation?

Yes, my LO had problems with seroquel. At lower dose, 25 mg, no benefit. At 32.5 mg she became confused and violent. Taken to the ER in a squad car. Luckily, no charges. Two days later she arrived at a new home bent almost double in a wheelchair, unable to move her body, glaring at everybody. Off the seroquel, believe it or not, she recovered to baseline. This was a terrifying experience for the family. Seroquel is off the table for us. The delusions continue.

_________________Annie, daughter of brave Marie, dx 2007 and in ALF

Tue Oct 18, 2011 10:32 pm

cdw

Joined: Fri Nov 05, 2010 11:30 pmPosts: 318Location: southern cali

Re: Seroquel increasing confusion and agitation?

yikes.. doc ordered seroquel for hubby because of delusions/hallucinations .. i asked about any know issues for lewy, with it.. he said to only use when he had uncontrollable hallucinations.. since he has ptsd.. the hallucinations can become sorta violent for him... he said the seroquel will knock him out and stop the hallucinations in less than an hour??, the trazadone and the mirtazipine combined did nothing last time....and they told me the same thing for them??!!!. now im worried to try.. he said it was the least know of the problem drugs..he said to watch for stiffening ...???

It is really, really hard on us that drug reactions are so different from one person to the next. My husband takes seroquel with no problem. My bipolar brother takes a huge dose of seroquel for anxiety and agitation (I think). Both men have to take it after being ready for bed, because it is very sedating for them almost immediately. Both take it daily.

Would it work for your loved one? That is the big mystery. About the only way to tell is to try it. If you are going to do that, start with a small dose and build it up gradually, as the doctor would probably advise you.

Since the hallucinations are very bothersome, I hope you find something that works.

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Wed Oct 19, 2011 4:32 am

sferios

Joined: Mon Mar 21, 2011 11:26 pmPosts: 49Location: St Pete Beach, FL

Re: Seroquel increasing confusion and agitation?

Thank you everyone. I did not give him his seroquel last night or this morning, and he is SO MUCH BETTER today! I am so glad I seem to have found out what the problem was.

Emanuel

Wed Oct 19, 2011 11:11 am

cdw

Joined: Fri Nov 05, 2010 11:30 pmPosts: 318Location: southern cali

Re: Seroquel increasing confusion and agitation?

just got the supply of serequel the doc sent for emergency's, with the hallucinations.. he sent a bottle of 100 mlg and said take half a pill at night.. that doesnt sound like a slow build up to me..???? if i gave him the 50mlg.. and he had a reaction, is it reversible if i stop giving it to him, once i notice a problem??

if the nms could happen on one dose.. how could i possibly take that risk??

are there other meds that have worked, for any of you.. with out the possible side effects???

Seroquel is the antipsychotic recommended by LBD experts in dealing with hallucinations and delusions. I suggest you speak with the MD about trying a lower dose "in an emergency."

Thu Oct 20, 2011 11:15 am

pmhodel

Joined: Fri Jun 19, 2009 11:23 amPosts: 201

Re: Seroquel increasing confusion and agitation?

Our experience with Seroquel for what it's worth to anyone. My LO was started on Seroquel at the beginning of his diagnosis about 2 and 1/2 years ago for the scary hallucinations. Also at that time started on Aricept and later on Namenda. Slowly, slowly all symptons improved until May of this year. I noticed he was getting agitated. This was about the same time we were packing and cleaning to return from our Florida home to Wis. I thought it was all the activity and confusion, so my thought was I needed to get him home and get an additional medication for the agitation. In the midst of the confusion, I forgot his Seroquel one night and the next day, he was so calm. I thought it was just another of the fluctuations of Lewy, but then I again forgot the Seroquel. (our travel day) Again, a calmness in him that I had not seen for a long time, so I called the neurologist and asked if I should keep him off of it. The neurologist said to try him without but I could call if there were problems. The only problem was on day four and five, he had stomach pain and nausea (no vomiting). He has been off the Seroquel since May 4th this year and so far only very, very mild delusions. As an added side benefit, previous edema in his feet resolved. I have no idea what the edema was from but the GP said probably circulation. Now I think it was from the Seroquel. At any rate, he is now on Aricept and Namenda only and we have settled into a fairly normal lifestyle (with a lot of modifications) I think it has been a process for me more so than LO. Good luck,Mary

Thu Oct 20, 2011 11:24 am

kban

Joined: Tue Jan 17, 2012 2:05 pmPosts: 2

Re: Seroquel increasing confusion and agitation?

Yes, my husband had a lot of problems with Seroquel. The dr. started out with 50mg to 100 mg to 150mg the first week. During this time he tried to exit the passesnger-side door of our car twice and drove our second car once a few miles--he wasn't supposed to drive and had not done so for over a year. Then, he kept taking his seatbelt off on our way to the psychiatrist's office. Even though I explained his actions to the dr. he insisted he needed to up the dose to 300 mg. We stopped at the pharmacy to drop off the prescription and he disappeared from me. He was missing!! After calling 911, he was found 3 hrs. later, passed out in a field behind a business a half mile away. I was terrified!! He was transported to the ER and from there to a mental health facility in order to adjust his medications. I would be very wary of Seroquel for DLB patients.Needless to say, even though he is no longer on Seroquel, I no longer leave him alone. I will never go through that experience again.

K

Mon Feb 20, 2012 12:42 am

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Seroquel increasing confusion and agitation?

I cannot imagine anyone starting someone off on 50mg! My husband started with 12.5mg and is now up to 50mg. It works well for him.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Actually, we have one local support group member who is on either 250mg or 300mg Seroquel per day. It has worked fine for him for several years!

Mon Feb 20, 2012 1:58 am

kathytj

Joined: Sun Apr 04, 2010 6:54 pmPosts: 64Location: Portland, OR

Re: Seroquel increasing confusion and agitation?

Meds and reactions all seem to depend so much on the individual. My husband has done great with Seroquel and Galantamine, but we had to add Depakote because his hallucinations were becoming so paranoid. On those meds, he has no nighttime bad hallucinations, relative clarity daytimes, still hallucinations but no really scary ones. But when I read that Aricept has been a miracle for LOs and caregivers dealing with dementia, I asked whether we could try it. Dr. said lower the Galantamine dose while slowly building up Aricept dose over a week. OMG! After only one day, LO was acting aggressive, cussing out the nighttime caregiver when I was out, acting very confused at daycare after a couple days of the drug. I took him off, checked with the psychiatrist, who said, yes, LO just reacts badly to this as some few do. You never know until you try! One person's miracle drug is another person's disaster! You just can't use the old-fashioned anti-psychotics like Halderol because of the possibility of freezing up permanently. Otherwise, from our experience, you just experiment.

Sun Mar 25, 2012 3:24 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Seroquel increasing confusion and agitation?

Truly, I think doctors--even specialists--are shooting in the dark with medications for LBD, going on the preponderance of evidence. I cannot stress this enough: IF YOUR LO IS HAVING A BAD REACTION TO A DRUG, TAKE HIM/HER OFF OF IT!!! Then tell the doctor. There have been too many instances that I know of where a new or changed medication has caused the rapid decline and death of a Lewy person. Risperdal [which is apparently OK for some] nearly killed my husband in 2008 from NMS. He did recover to baseline, amazingly enough.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Sun Mar 25, 2012 4:47 pm

Challenged

Joined: Sun Oct 17, 2010 2:06 amPosts: 63

Re: Seroquel increasing confusion and agitation?

My husband had severe paranoia, interpreted every sound after dark as intruders. He would duck down below the windows rather than be seen from outside, and refused to talk above a whisper. We got the DLB diagnosis after about a year of such behaviors, and he was put on 2.5 mg zyprexa. Within days his behavior improved. Zyprexa probably added a year to his ability to maintain a relatively normal lifestyle. His hallucinations gradually increased, and we have had to up the dose considerably. There is no way to know if the medication hastened his decline, but zyprexa has made him, if not comfortable, at least less uncomfortable. Lewy has stolen the greater part of his cognition away, and that certainly was going to happen no matter what he took or didn't take. It is a kindness to find the ways to ease the distress of mind lewy causes its sufferers.

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